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To support EU
Member States in reaching the Sustainable Developmental Goals, the European
Commission has established the new expert group “Steering Group on Health
Promotion, Disease Prevention and Management of Non-Communicable Diseases”. The
Group sets Public Health priorities and coordinates implementation of
evidence-based best practice interventions in other countries. We conducted an
interview with Marita Friberg from the Public Health Agency of Sweden, who presented
a best practice example on prescribing physical activity for physical and
mental health problems, which planned to be implemented in 10 other member
states.

PB: Thank you, Marita, for agreeing to participate in this interview. Could you please give us a short summary of your best practice example on prescribing physical activity? How did your project become part the best practice examples?

MF: Our project was
suggested by the Steering Group as a best practice example. We developed a
method in Sweden (prescribing physical
activity), which has been scientifically evaluated and is proven to be as
good as medical treatment (to address
physical and mental health problems). Prescribing physical activity is used
in healthcare, and follows the medical treatment process: the prescriber has to
be registered, the process has to be followed-up and documented in a systematic
way. The prescriber could be a doctor, a nurse or a physiotherapist. These are
the key figures of the method. The evidence-based handbook presents
prescriptions for different diagnoses. The treatment is individualised,
happening in a dialog with the patient and based on each person’s capacity and
motivation.

GB:What can you do if people do not want or cannot afford to buy a membership for a sports facility?

MF: The recommendations in the guidebook only indicate the dosage, not a particular activity. For example, strength-training three times a week or aerobic training four times a week. Then, in dialog with the patient, we discuss what is most convenient, and we try to find the physical activity which suits the person the best. The dialogue is central and essential to the implementation of the best practice. If the cost for gym is too expensive, then you can find other options, such as using your own bodyweight or working out at home. We talk about how you can integrate physical activity in your everyday life. For example, if you are going to your workplace or visit friends, walking, getting off the bus earlier or cycling, all of those would be an option to increase physical activity. Or taking the stairs instead of the elevator. The majority of patients receive prescribed walking. It is not about the exercise itself, it is about physical activity.

PB: …but what if I don’t want to do it alone?

MF: Then the healthcare can inform you of physical activity providers and groups in your area. In some regions, there are even health coaches. If you visit your doctor, she/he can recommend you talk with a health coach, who is usually a trainer or physiotherapist, and the coach can help you further.

PB:In Belgium, GPs have more or less 15 minutes to see a patient. How can this dialogue fit in such a short timeframe?

This is also a
problem in most of the countries we have been talking to, because only the
doctors are allowed to prescribe. In Sweden, we are using special trained
nurses, because doctors often have limited time for a dialogue. It is cost-effective to use nurses. However,
it is important to have doctors on board because they meet the patient and they
can suggest the patient to talk to the nurses. Doctors can be the door openers,
but they do not have to be the person who has the dialog with the patients.

GB: What is your experience about working with people from lower socioeconomic background? Studies show a social gradient in physical activity.

MF: This is an important issue we have to work on. Also, the adherence to the prescription. We are struggling in Sweden, because prescription for physical activity is an offer that patients can accept or decline. This group more often declines the prescription for physical activity and prefers taking medication. We have to include them somehow, otherwise only those who are motivated will participate in our project. This will increase the inequality gap. So, this it is a future lesson to learn, how can we work with these vulnerable groups.

PB: What do you think would be the struggle to share and implement this project in other countries? The healthcare systems might be completely different.

MF: That is why we need a feasibility study at the beginning of the project. We try to be realistic: it is not going to be implemented on national level. We start small. We will work with actual health professionals on local level, who talk to patients and who want to implement our project. Parallel on the structural level, we need to raise awareness in stakeholder workshops, and show how our method could be integrated in the health care system.

PB: What should be the role of the Steering Group on Prevention and Promotion?

MF: I think the Steering Group has started this project, as they see how important it is. We have 10 participating member states at the moment and about 5-6, who want to join. But, we have a limited budget and limited time. We can start the European implementation in this first project, but the Steering Group has to acknowledge that it will need further support, as you are not going to solve this problem with a three years project. While we start with these 10 participating countries, other countries might see the benefits and would like to join. It is important that we can introduce this method to them as well.

PB and GB: Thank you for your
time. We really look forward at seeing how this project will be implemented.

This interview was conducted by Young Gasteiners Petronille Bogaert and Gerg? Baranyi

Nicola Bedlington is European Patients’ Forum’s Secretary General since September 2014 and was previously the Executive Director since the setting up of the EPF Secretariat in June 2006.

TB: Mrs. Bedlington, can you please tell us what
is your position and main occupation?

NB: My name is Nicola Bedlington and I
am the Secretary General of the European Patients Forum (EPF), an organisation
that works with patients’ groups on public health and health advocacy across
Europe uniting the interests of and voice of patients. EPF helps to empower
patients’ organiations through educational programmes, policy initiatives and
projects. The European Patients Forum works with all the EU Institution and
also in close collaboration with other stakeholders in Brussels. My own
background is in the disability field at European level, and I have been with
EPF since 2006 when I set up the secretariat in Brussels.

OM: Based on what we heard in the session this morning, we would
like to hear your opinion on early patient engagement in medicine development.

NB: We are currently co-leading a specific project called PARADIGM , a Public Private Partnership, funded under the Innovative Medicines Initiative. PARADIGM aims to create a framework for meaningful patient engagement in the entire lifecycle of medicines, collaborating with the industry, the regulators, the HTA community and healthcare professionals, patients, and so on. We have three focal points within the project. One of them is prioritization of medicines research, another one is clinical trial design and the third one is the very crucial early dialogue between industries, regulators, the HTA community and patients on looking at the evidence requirements for specific product technologies. This project started only six months ago, and a strong focus has also been on the matrix of patient engagement, concretely why it matters and the difference it can make.

TB: Could you highlight any major challenges for
the project so far?

NB: I think that one of the advantages
is the good teamwork – we are a thirty-four-member consortium made up of
industry, academia, patients’ organisations, NGOs and ethics panels, and the
collaborative spirit is really there. One of the challenges is that it is a
very short project, it is only thirty months, so we need to achieve a lot in a
very short period. Thus, it is crucial that there is an alignment with other
organisations working on patient engagement to avoid any duplication. Rather
than looking at it from a competitive perspective, it is important to look at
the complementarity and synergies, so that we can move forward as effectively
as possible and create durable change in mindset and practice.

OM: From a regulatory framework perspective, is there anything that
would support you to better advocate for patients and support them in accessing
medicines?

NB: I think we could model what has
happened within the European Medicines Agency (EMA), which has a very strong
patient engagement strategy. So, patients are involved at all levels: on the
management board, in the scientific advisory committees. There is an ongoing
patients and consumers working party bringing together patient groups and
consumer groups, and the Pharmacovigilance Risk Assessment committee (PRAC) has
patients fully on board. These are all examples where patient engagement has
really been embedded and it would be nice to see similar approaches in other
areas, for example the HTA environment.

TB: How can we support patient engagement in the development of
healthcare services?

NB: In my opinion, this is really relevant, because it brings us back to the question “Do we ask the right questions?”. Therefore, patients need to be involved in this discussion – they are the ultimate recipients of healthcare services and what the healthcare system stands for. The right approach is therefore to involve them in the dialogue, rather than have them tick boxes. We must involve them in the discussion around what endpoints we are looking at, and what matters for them as patients in terms of outcomes. We need to move from patient reported outcomes, to patient designed and patient relevant outcome measures. We are collaborating with OECD on this issue through their PaRIS initiative.

OM: Is transparency something that is challenging between different
countries and bodies in your point of view?

NB: Transparency can be all sort of
things to different people. We have developed transparency guidelines with and
for our members. The aim of these guidelines is not about policing member organisations,
it is about encouraging them. The role of transparency is discussed not only in
relation to funding received from industry – it is also about the way of how we
do advocacy and consultancy work, the way our governance is structured, the way
we communicate and how we undertake projects. So, in short, our entire area of
activity. These guidelines have been very well received by our members. Another
example of transparency links to clinical trials. During the Clinical Trial Regulation
legislative pathway, we did a lot to make sure that there were appropriate
references to transparent publication of clinical trials’ results, also in
layperson’s terms, even if these trials go wrong. Obviously, transparency in
relation to pricing is also a big theme, we have mixed feedback from our
members: some of them wish for complete transparency, others prefer to get an
idea how prices are actually arrived at. We will be publishing an updated paper
on value and pricing where we call for a fair framework to ensure optimal
access to valuable innovation by patients across Europe. We need to find that
important balance between innovation and solidarity.

TB: Is there also a need for patient engagement
in the area of orphan drugs?

NB: I think there are a lot of unmet
needs in the area of rare diseases relating mostly to children. Big efforts are
being made to address some of the bottlenecks in the system. EURORDIS is
playing a critical role here as the representative voice of patients with rare
diseases, and EPF member.

This intervierw was conducted by Young Gasteiners Theresa Bengough and Oana Motea

“Tuberculosis is our shame; Elimination of viral hepatitis C is very possible and HIV/AIDS is more complicated.”

I have met Dr Andrew Amato at the main conference venue of the European Health Forum Gastein, which he attended for the first time. During an hour-long interview, we had an interesting and fairly open discussion on where European Union is now in reaching SDG 3.3, as well as what are the key reasons for that. I hope you would enjoy reading this article as much as I enjoyed talking to this passionate health care professional while drinking a coffee on a sunny terrace of a small café surrounded by the Alps.

AT: The motto of this year EHFG opening plenary was “Let’s think big for Public Health in Europe”. What does it mean for you to think big?

AA: For me, it means that we should be more ambitious in our aims and our goals. Even if we know that we are being too ambitious, this is important as the political commitment to public health today is rather weak, so politicians do need aspirational goals. I don’t see a lot of public health champions among the politicians today. There is also a tendency towards adopting more populist policies. Unfortunately, this usually means the politicians will tend to only focus on policies and make promises that will provide short-term satisfaction. So, we, the public health activists, need to look at the big picture and set ourselves bigger goals that could inspire the politicians to follow suit and plan greater policies, rather than going for immediate and short-term outcomes.

For example, hepatitis C elimination in Europe is ‘easily’ achievable from a policy aspect – the only thing that needs to be done is testing of the at-risk populations and providing curative treatment, as simple as that. Of course, it would cost a lot of money initially, but the benefit such a plan is that it will have to be done only once on large scale.Obviously, I am oversimplifying to make a point, but it really can be done with the help of motivated and strong-willed politicians behind it.

Vaccination is a similar topic: we could do so much better with just a little bit more emphasis on the right legislation, a bit stricter enforcement and stronger advocacy strategies. By now, we were supposed to have eliminated measles in the EU: we have the tools, we have the money, and yet, for the lack of interest and political will, the campaigns have mostly faltered. I am convinced that a major campaign – and by “major”, I mean a suitably funded campaign with inspired leadership, which is run over 3 to 5 years,focusing only on measles –, would easily manage to eliminate measles in the EU. The USA had managed to come very close to achieving this, and then faltered for various reasons, which unfortunately include recurrent imported infections from the EU. That’s the kind of high-level policies we need, with countries coming together and agreeing that we need to work on this particular priority and putting sufficient resources there. The problem with this is that the health mandate of the EU Commission is still rather limited. Namely, there have been brave attempts in starting up major partnerships (e.g. against tobacco or cancer) and becoming more involved in public health, but it is still a work in progress. The organization of health services is still the mandate of Member States, so we have different health care services across the EU. For me, this is in a way against the spirit of the EU, which is all about crossing borders without any obstacles or differences. So, as long as health care services,disease prevention and health promotion services are different in every country, a citizen moving from one country to another will face differing services. We still have a long way to go for the EU to fix that. From the public health perspective, the DG SANTE is probably not the most influential sector of the Commission – it is nowhere near the Economics, the Finance, or the Foreign Affairs sectors, just to name a few. I think we should all work on raising the profile of health to a satisfying level.

AT: Turning to one of the SDGs, precisely to SDG 3.3 – what are the key priorities for Europe?

AA: Yes, the famous SDG 3.3…. It is unlikely that we will be able to achieve TB elimination in the EU within the target. This is a disease which is almost 100% curable with antibiotics, and yet, despite all the medical advances that we have made, we can’t seem to “fix” it in the EU. I don’t understand how we have found ourselves in this situation. It’s true that the numbers are decreasing, but the decline is very slow. We need to focus on the latent TB, especially because we have never given it the attention it deserves. MD RTB shouldn’t remain the problem it is now, there are new tools coming online quite soon which hopefully should make it less of an issue.

The SDG 3.3. refers to combating hepatitis.What does that mean? The UN has come up with numbers, planning a reduction of 90%, but I think that total elimination of HCV is what we should aim for at the EU. As I said before, we already have all the necessary tools in the EU, and we have good health care services, so why can’t we achieve that?

For HIV/AIDS, the SDG target is more complicated. We have at last begun to see a true reduction of incidence in the EU/EEA, first seen in the surveillance data of the last year, mainly in new cases of infection among men who have sex with men. This is largely thanks to the adoption of Test and Treat policies and the roll out of PrEP for at-risk populations. I think people began to realize that the more we adopt these ‘fast-track’ policies, the more we will see HIV coming down rapidly. Also, AIDS rates are dropping very fast because the treatment is working so well. On the other hand, we see epidemics of gonorrhea and syphilis in the EU. With further roll out of PrEP, we can expect to see more of these. Still, it will be hard to know whether this is due to more new infections actually happening, or because at-risk people are tested more often and thus are found to be infected. However, I think if PrEP is implemented properly, the highest-risk groups will likely attend services more often, both for their prescriptions and screening tests. This way, they will be tested and treated for syphilis and gonorrhea as well, possibly bringing these down in the longer term. So, there is a possibility of using PrEP to reach out to the most at-risk group and reduce their overall infection risks and exposure. The current rates of increase of STIs are concerning, and we are expecting to find out more about the rising rates of congenital syphilis in the USA. We haven’t seen it yet, but we can expect that this is going to happen in one- or two-year time.

Of course, malaria is not that relevant in the EU for now, but if the rates of other vector-borne diseases are anything to go by, it is just a question of time.

So, I believe HCV is where we could achieve the most. For TB we are not doing as well as we should, especially in the east of Europe. And as a side effect of PrEP we might be also combating STIs.

AT: I also wanted to talk about SDG 3.3. and migration. You have published several papers related to the issues of migration. Every now and then, something happens in the world and we have a new wave of migrants arriving to the EU, bringing new culture, traditions, languages, as well as new health-related problems. What do you think of that?

AA: Our work with migrants is limited, because ECDC’s focus lies within infectious diseases, which might not be the major public health problem for migrants. TB and, to a lesser extent, hepatitis may pose some problems, especially among irregular migrants coming from high-prevalence areas, but for HIV/AIDS this is much less of an issue. The problems for migrants go beyond infectious disease, and we don’t have a mandate there.

A specific problem with migrants that I have is the word itself. We use “migrant” for a very broad phenomenon, and mostly synonymous with migration from outside of EU: there are people who are economic migrants, for example the North Africans, who are trying to get across in order to get work; there are war refugees like Syrians, and there are whole mix of central Asians, who are looking for a better life. Still, we tend to put all of them in one basket of “migrants”. They all have very different problems, very different issues, very different health needs. It’s such a complex issue, and our work has been very limited. Some policy advisers asked ECDC to define whether we should be testing “migrants” for certain diseases, for example. In response, we developed guidelines that specify what should be asked if a test is offered, and of course, stating that those tests should be provided only on voluntary basis. Also, if a test is provided, the treatment has to be made available, otherwise it is simply not ethical to test. TB in migrants is something that we focus more on, as many migrants come from high-prevalence areas, but hepatitis and HIV/AIDS are among the least health problems migrants face. HIV/AIDS, as we have found out, becomes a problem for the migrants after moving to the EU. There is good data showing they get infected more often after they had moved to the EU. It is quite the opposite to what right-wing politicians like to preach – that the migrants bring HIV/AIDS to the EU. Finally, as already mentioned, we use the term mostly synonymous with migration from outside of the EU, but we should also consider the impact of migrations within the EU, from Eastern European to Western European countries.

AT: To sum up, this is your first time at EHFG – what does it feel like?

AA: Yes, it is. So far, I have only seen the village (laughing) and the village is very cute and I love the mountains! So, I am very happy to be here. I am here with my director, we will have ECDC session tomorrow, and I am looking forward to our session, we will see how it goes.

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“I’m here to tell everyone about the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases, and explain to organisations and other health stakeholders how the approach works.”

At the European Health Forum Gastein 2018, Marianne Takki was present to discuss the activities and role of the European Commission in non-communicable diseases (NCDs) prevention and control.

MD: You mentioned that the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases[i], which the European Commission established this summer (2018), is a totally new approach. What is so different about this approach compared to how the Commission worked on NCDs earlier?

MT: Previously, there were several disease-specific expert groups at the Commission, such as on rare diseases, cancer control, and mental health. The outputs of these groups were not effectively taken forward. We [the Commission] realised that, for plans and recommendations to be useful to someone, implementation needs to be the focus of all planning. Now, with the new steering group that officially started in July 2018, the member states are involved from the beginning. The aim of the steering group is not to create aspirational statements, nor develop new policies: instead, the steering group will address what we already have. This approach puts health in all policies into practice.

“The Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases, which is established by the European Commission in July 2018, is a new approach to non-communicable disease control in Europe. This approach is about health in all policies being integrated into practice.”

Through the best-practices portal – which is a part of this new approach – we make sure that the member states know which NCD interventions are available and which can be implemented. Preferably, these practices are already implemented in a country or region and, with some adaptation, can be implemented in other places. The best practice portal is more than just a collection of best practices, it also includes an evaluation, for which the assessment criteria are established by the steering group. Finally, the Commission provides funding to member states for the implementation of best practices

MD: NCDs are now on the political agenda, but winds might change. How can we keep NCDs on the national and European agendas?

MT: Commitment of member states is realised by having regular prioritisation exercises, where member states prioritise their own needs. There are already many agendas out there, such as the sustainable development goals (SDGs), so the steering group aims to support member states in achieving the targets and goals that are most challenging for them.

MD: What can we expect from the steering group in the future?

MT: Until today, the Health Programme was the main funding for health projects. But now, while we are moving towards the next multi-annual financial framework of the EU (2021-2027), this will change. The steering group will be the main mechanism. I’m here [at the European Health Forum Gastein] to tell everyone about the steering group and to bring forward our approach, so that it becomes clearer to organisations and other health stakeholders. It is a new approach and we are taking baby steps in the beginning. The positive feedback that we have received from the member states since the launch of the steering group is a clear indicator that we are using the right approach.

In the next multi-annual financial framework, health is incorporated in the ESF+ programme, within the so-called health ‘strand’ or ‘cluster’. As stated in the proposal for the ESF + programme, article 29 in particular, the steering group would mainly be responsible for the health strand, including the work plans, prioritisation, strategy and implementation of the public health activities in the EU.[i] We are aiming for a more upstream decision-making process in the future. This would mean that the steering group can steer financial resources based on member states’ health objectives.

By the way, 7.7 billion euros are set for health research in Horizon Europe [the new research cluster]. I don’t think people see the opportunities here.

The first formal meeting of the steering group – chaired by Martin Seychell – was held on 6th of November 2018. We also plan a joint meeting between the steering group and the current Horizon 2020 research programme committee in Brussels in early spring 2019. This is to facilitate discussions between the stakeholders from research and health on ministerial level and the different Commission services on where the synergies are. This is one concrete future step in making sure that our policies are aligned, and our objectives are in synergy.